Family and Caregiver Schizophrenia Discussion Forum

What to do with Mom?

My Mother has schizophrenia. I cannot deal with being around her. She lives 16 hours away.
I now have my own family with young children.
My dad is not in great health and they are barely able to care for themselves.
He likely needs assisted living but I cannot imagine they’d keep her due to behavior issues.
I will not allow her to live in my home. She’s caused enough trauma to me and I will not allow it for my kids.
I have gotten zero information on group homes etc in her area. I don’t know how I could even get her moved (she’s very stubborn and insists she wants to stay her I her home). This isn’t possible as she is very low functioning.
I can’t imagine my dad will be alive in the next 1-2 years. He made no plans for her despite my pleading for 10 years. So it will fall on me.
Do I just leave her alone and let her get committed and let the hospital/ SWs deal with it when the time comes?
My dad is in denial over her condition so he thinks she will be just fine on her own.

Take it day by day with her. You clearly know what you want- to help her/get her help, to care for your children & your mother separately, to get the information you need.
Start small. Reach out to organizations now that can help you best with you & your mother.
Ask your mother what she wants. Talk to her. She’s your mother and it’s hard to deal with a parent with schizophernia. Tell her/remind her you there to help and you love her.
Try finidng a median soulton to what you both need.
Talk to your father individually as well. You’re right he might not be there in the future to help you/your mother, but he can help you now.

I think that’s the hard part. He’s not able or willing to help with her. He had a bilateral lung transplant 4 years ago. She was supposed to be his “caretaker” and she got kicked out of the transplant house for behavior.

It made a very stressful situation- a million times worse. I had to find someone to go and pack her up and get her home while my dad was “touch and go”in the ICU.

He doesn’t believe me when I told him this happened.

I had to get lawyers into the hospital while
I am states away to sign me over to the POA because she wasn’t competent to make medical decisions for him as he required emergency care multiple times in the last few years. The doctors weren’t comfort with her making decisions. Despite my dad thinking she was fine to.

I also had lawyers set up a trust for my mom. My dad refuses to fund it.

I’ve talked to the PA department on aging and her psychiatrist. They have no leads for
Me on placement for her or what to do when the time comes. Which is probably overdue because they are barely scrapping by.

I feel like I’ve spend so much energy trying and I’m getting nowhere. It’s like watching a car crash about to happen and you can’t stop it.

Where are people like my mom supposed to go for long term care and who helps you get them there??

It sounds as if your father plans to stay with her in their home as long as possible, but she will probably need some sort of guardian if he predeceases her. My understanding is that if family members are unable or unwilling to perform that duty, the courts will appoint a third party to do it.

If she is eligible for Medicaid, she might be able to get home health assistance through the Pennsylvania Community Health Choices (CHC) Program. Ditto for your dad.

Here’s a list that includes some residential assisted living facilities for Pennsylvanians living with psychiatric disorders:

npidb.org/organizations/nursing_and_custodial_care/assisted-living-mental-illness_3104a0625x/pa/

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P. S. Here’s a link to a site mentioning the CHC program:

www.paelderlawsolutions.com/2019/02/pennsylvania-has-a-new-medicaid-program-for-in-home-care-learn-more-about-the-pennsylvania-community-healthchoices-chc-program/

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Is the PA department on aging the same as Adult Protective Services? APS can be very helpful in a situation where a person incapable of taking care of themselves loses their caretaker. There are qualifiers for residential nursing home care, they will make an assessment of your mom.

Nursing home situations are quite happy to take people on a cash paying basis. If your mom objects, APS will help you if they decide she is incapable of living on her own.

If your mom is incompetent and does not qualify for Medicaid, you can use her and your dad’s assets to pay for her care until she is out of funds (and often assets) - at that point the nursing home can help you start the process to apply for Medicaid.

The period in which you are using her cash and assets to pay for her residential home care or nursing home care is often referred to as a “pay down” period. This is where some families cause problems for themselves. Medicaid is a state program that does vary from state to state, you need to make yourself familiar with Pennsylvania rules. When an application for Medicaid is processed, part of the process looks at the spending over the past several years. If money or assets were transferred a “payback” period can occur.

Example: Parents begin to need nursing home care, its expensive but they know Medicaid will pay if they don’t have any assets. Assets and funds are given to children. Medicaid later rules that the transferred money amount must be used first before they will begin paying for care. Children and whoever have to pay for nursing home care up to the amount Medicaid said was transferred before Medicaid will start covering costs.

Yes, the same process can occur without your help. (This is where some people have heard the phrase “the nursing home took Mom and Dad’s house”) Not exactly, but someone will be appointed to oversee her assets and use them for her nursing home care.

We had to move my husband’s parents to our state - none of their relatives in the state they lived in was willing oversee their assets and care. Our state required they live in the same state as my husband in order for guardianship to be established. It makes sense, in our state the person actually becomes a ward of the state with someone appointed as guardian. In our state there has to be a guardian over person and “estate”. They don’t have to be the same person.

You see the phrase “in our state” a lot in my writing. These issues can vary quite a bit state to state. You will have to do the research.

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Thank you both for your responses. This is very helpful. It’s so difficult not getting any answers when I ask “services” these questions and I don’t know anyone else in the same position.
I will look into APS. That seems like a way to go to get evaluated and more information! I hadn’t heard of them before since I’m out of state.
You made it seem a little more manageable to know there are services for this situation.

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Re the “lookback” period:

www.medicaidplanningassistance.org/medicaid-look-back-period/

The Veterans Administration has programs for qualifying veterans, as well:

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